There is a darkness I fall into sometimes, of my own creation. It is never that I forget how much I love Kiran – It is never out of a desire that he be different than he is. And it is never out of malice toward others with healthy children – It is never that I want anyone – ANYONE – to have to experience this whirlwind, though so many I am connected to have been living inside it much longer than me.
But sometimes, I just plain feel sorry for myself. Sometimes, I just look around at all the healthy children my friends are raising…or I think about all the healthy children I helped raise as a nanny for nine years…and I just think WHY? Why me? Why couldn’t I have had a healthy child? Why couldn’t Kiran have been born with a healthy heart?
I cry in church all the time. These last four weeks, the sermon series has been on suffering. I have literally sobbed. I hate crying in public. I do. But so many of my emotions have been so raw, and now that I have been able to live inside the exhale, post-surgery…I have a little more time and space to feel them.
This morning, the pastor was using a story about his almost one year old son using sign language as a means to communicate, to illustrate something within the sermon. I just so happened to be in the bathroom during the story (there are speakers so I could still hear the message, even while dealing with my overactive bladder). I am so thankful I was in the bathroom, because that simple story just made me cry.
I taught so many of my nanny kids sign language. I had the excitement and the feeling of accomplishment when they could sign back to me. It is yet another developmental goal that Kiran is so far from. And sometimes, that stuff just hits me. And I’m sad. For him. For me.
I am not different in any significant way from anyone else with a medically fragile or special needs child. I am fairly certain none of us grew up imagining our family this way. I dreamed about being a mother my entire life. I devoted my post-college years to being a professional nanny because I essentially got to live the dream and get paid for it, while waiting for my own personal dream to come to fruition.
It is nothing like I imagined it would be. And I wonder why this is the path I’ve been placed upon.
I think I am beginning to come to terms with the fact I may continue to grieve for awhile. It’s a different sort of grief. It’s the letting go of the life I always dreamed of, the one I always imagined. And it’s learning to embrace, every single day, the life I have been given. The life with the strongest, bravest little boy I know. I wouldn’t trade it, but there are days I’m frustrated with it and deeply sad about it anyway.